6 replies to this topic

[ldslara]

This is my first post, but I've been reading through the forum for about a week and really appreciate what a resource this community already is to me. My 8 yr old son's (TtG) IgA test a week ago was off the chart. The test says >10 is positive, and his was >100. We have an appt with a Ped GI on Dec 4. I've read a couple of studies that with this high of bloodwork an endoscopy isn't necessary to diagnose celiac disease, and I've see that some doctors will diagnose without it, so I am thinking I will push this course with the doctor. Is there any reason I haven't heard about to have it done besides a confirmation of the blood test. I did read that the doctor also has a capsule endoscopy option, would it be better (or worse) to do that instead? Or is it really pretty reasonable to just skip the whole thing with his results? Thanks for helping me to sort this out!

[mushroom]

Welcome to the forum, Idslara.

As recently as four or five years ago no doctor would consider giving a celiac diagnosis on the basis of blood work alone, no matter the score. The endoscopy, the "gold standard", had to be done to confirm the diagnosis. And if you tested negative on biopsy you were usually told you were not celiac and you could eat all the gluten you wanted. You will still encounter many old school doctors who adhere to this protocol. Just as, apparently in your son's case, they ran only the tTG IgA, and none of the other celiac tests because celiac has always been considered a disease of the small intestine (only). We now know that is not true. And we now know that non-celiac gluten intolerance makes you feel just as bad as celiac; the jury is still out on what, if any, damage it does.

Part of the problem with the tTG is that there are other conditions which may elevate that score also (and as a matter of fact, there are other conditions that can cause damage to the villi in the small intestine, just to further complicate the picture, although celiac is more common.) This is one of the reasons why it is helpful to run the other tests in the celiac panel too, one of which, the DGP, is very specific to celiac.

One argument for doing the endoscopy is that it could uncover other unsuspected conditions. Many of our older members have found that they have h. pylori that they did not know about. Of course, the pill cam can do the same thing and I have no opinion one way or other about which would be the bettter option for you. The pill cam does traverse the entire intestine so reveals things that an endoscopy cannot. Whether or not either one of these is necessary really depends on you and your discussion with your doctor. It is ultimately your decision. But what you are looking for is a diagnosis that he can carry with him through school, so that special education plans can be put in place to protect him from gluten. Most schools require this in writing, and it even carries forward to meal plans in college. For an adult the diagnosis is not as important, apart from its effect on military service.

I hope this has been helpful and not just confused you further.

[mommida]

My daughter was too sick to have the biopsy done at 16 months old. She was hospitalized days after the blood draw for the Celiac panel for dehydration. She was diagnosed "probable Celiac" from positive panel and DQ2 and DQ8 Celiac genes. Things seemed fine on the gluten free diet diet until she was 6 years old. It seemed she was having gluten sympptoms again, but worse. She started to vomit up to 5 or more times a day after having having a "viral infection" that had her vommitting blood.

She was then scoped wtih a biopsy to diagnose Eosinophilic Esophagitus. More foods have to be removed from the diet as there are probably more "triggers". (gluten is a common "trigger" ) Research has now proven a link between Celiac and Eosinophilic Esophagaitus.

So having a scope done can show a proper, full diagnoses of Celiac and/or other disorders and give you a baseline of the amount of Celiac damage damage for comparison to recovery on a gluten free diet.

As my daughter's case she was (and is ) hospitalized on average once a year for dehydration or illness. Could the hospitalizations for the 3 years before the EE diagnoses have been prevented if we had Celiac and EE. diagnosed and treated?

[kb27]

If you can get a doctor to diagnose without an endoscopy, and his ttg IgA levels come down on a gluten-free diet, then I think you have your answer. Our doctor wouldn't diagnose without the endoscopy, and we wanted a diagnosis for school, etc., so our 8-yr-old had the endoscopy. It was not hard for him.

As the other posters note, there are other potential causes for high ttg IgA levels, too.

We had a 6 week wait between when we found out our son had high ttg IgA levels (like your son's they were > 100) and when the endoscopy was scheduled. We used the time to test out some gluten-free recipes, so that after the procedure, the switch was easier to make.

Good luck with everything! Either way, I would put him on a gluten-free diet after the testing is done.

[ldslara]

To give a bit more information, my dad tested positive for celiac disease several years ago, and I just clued in on the idea that I had symptoms. I have been having alot of eczema in the last six months, and had been prescribed steroid creams that hadn't helped much. I also started having more digestion problems. When I realized those symptoms could be celiac disease, I also keyed in on the idea that N (my son) might as well. He's always had a sensitive stomach - his growth is fine, but he has trouble with constipation/diarhea, and is a picky eater. But his doctor felt like it wasn't unusual, so we hadn't pursued it much. Anyway, when I realized I should be tested, I decided to test him as well. I also read in this forum that I would have to get off all the topical steroids or they might interfere with testing. So I stopped taking those, and he got tested. And that was his result. He also has had reading and speach delays, which I realize might also be related to this condition. The school accepted the blood test as a Dx already, and I have told them we will be starting the new diet in January (I though it would be easier to start after the holidays, and I knew we couldn't start until after the Ped GI appt. anyway. So I am hopeful that with our family history (I'm testing on Monday, and will hopefully have the results in time for his appt), the blood test, and his symptoms, we can Dx without the endoscopy and see how he reacts to the diet and if his (tTG) IgA comes down. But I guess I'll have to see what the GI says, I appreciate your insights into that option.

After his high test I got his siblings tested, and just got results - his brother S had a weak positive score (4) (4-10 is listed as a weak positive) and his Immunoglobulin was also high. (not sure how high, haven't seen the printout yet). Does anyone have any insight on how predictive that result is? I'm unclear what a high Immunoglobulin score means, any insight on that would be appreaciated. Thanks so much for your help!

[txgal748]

I was diagnosed by (TtG) IgA test in May by my neurologist, my results were also >100. She sent me to a gastroenterologist for confirmation. The gastro doctor had me take the genetic test for celiac which came back positive. I have heard that the test is expensive but my insurance covered the test. I was grateful not to have any other tests since I was about to have to undergo surgery. I think ultimately the choice is yours given the information you get from the Dr. I have silent celiac disease and I have felt 100% better since going gluten-free and taking B12 and D3(deficiencies).

[shadowicewolf]

An endoscopy is considered surgery? news to me...